Wednesday, January 8, 2014

On not explaining your child's special needs to strangers


This is a bin at the security checkpoint for LAX in California. Max insisted that his Cars 2 DVD go through on its own. There was a long line of people behind us. It was no biggie, especially if it helped keep the peace; the hustle and bustle of security has been known to make Max lose it. The man behind us gave me a look, but it wasn't him I cared about.

I glanced at the staffer manning the conveyor belt. "He just loves that DVD, and he'd like to get it screened," I explained. "Got it!" she said, and it sailed through.

I have reached a point where I do not feel I always have to explain that Max has special needs in public situations like this. People have their quirks and nuances. The real challenge is deciding whether or not to note that Max has special needs when he disturbs people, as happened when the flight landed. We were circling the tarmac for a few minutes and the kids started squabbling.

"ARRRRR!" roared Max.

I was in a seat across the aisle; Dave was next to them, earphones on, placidly staring into space. This is our usual seating arrangement, as the kids like being next to Sucker Daddy who will gladly buy them overpriced treats from the food cart.

I noticed a woman behind Max peering between the seats to see what was going on and grimacing.

"Kids! Behave!" I said, leaning over.

"He started it!" said Sabrina.

"Noooo!" said Max.

"Max, calm down, we're almost there," I said.

Max let out a string of words only he could understand, but there were a lot of exclamation points in there.

The woman, a well-turned-out matron, glared at me. "Can you please control him?!" she said. "Those sounds are annoying."

I gave her a long, hard look. I could have mentioned that Max has special needs, and that "those sounds" are his way of communicating. In these sorts of situations, I feel as if I'm both parent and special needs ambassador. I want people to better understand Max and kids like him. I want them to know that he is expressing himself in his own way. And that he is not being a brat when sensory issues get the best of him and he loses it, as can happen in noisy places like restaurants.

Thing is, I felt this woman was overreacting. Max had behaved admirably throughout the four and a half hour flight, with nary a peep or a kick. (He used to have this horrible habit of kicking the seat in front of him, but mercifully that's passed.) We were about to disembark. Did she need to know he had special needs? Couldn't he just be any other restless kid, voicing his discontent in his way?

And so I just said, simply, "I'm sorry he's disturbing you."

Dave sat there, obliviously. Sabrina blew me a kiss. Max let out another string of words and an "ARRRRR!" for good measure.

The woman rolled her eyes.

Such is life.

37 comments:

  1. You're a better woman than me. I don't I could have kept myself from responding to that lady.

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    1. As a mom of a child with Down Syndre, I have to agree... I would've lost my sh*t!

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  2. And this is yet another reason for inclusion. On our flight there was a kid who clearly had some sensory issues. He was sitting behind my teens who have had experience with kids with those issues since kindergarten. The women next to them was making critical comments and my daughter piped up " I think he has special needs and can't help it. Ypu are just making his family feel bad!"

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    1. What a brilliant story! I hope my daughter will respond the same way if she is ever in the same situation.

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  3. Some days we just leave it all up to Mrs. Kharma.

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  4. Instead of "I'm sorry he's disturbing you", how about "I'm sorry you're disturbed"? It's just as polite, but closer, I think, to the truth.

    As that woman journeys through life encountering the inevitable crying toddlers, hacking coughers, folks with speech issues, autistic stimmers, etc., she may one day become an inadvertent annoyance herself. Elderly, with physical infirmities and dementia, she may irritate people by walking too slowly in front of them, or commenting too loudly at inappropriate times, or simply by being a physically unattractive presence.

    As you say, such is life. Let's all be tolerant of each other. And if we can manage it, let's even be kind.

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    1. Well said, Anon, and touché! "I'm sorry you're disturbed!" with its double entendre would have been an even better response. Using that next time!

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    2. Anonymous....
      "As that woman journeys through life encountering the inevitable crying toddlers, hacking coughers, folks with speech issues, autistic stimmers, etc., she may one day become an inadvertent annoyance herself. Elderly, with physical infirmities and dementia, she may irritate people by walking too slowly in front of them, or commenting too loudly at inappropriate times, or simply by being a physically unattractive presence.". Very good!! And, as a writer {Unpublished} I have to also mention that your writing is quite descriptive!! ;)
      --Raelyn

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    3. Hilarious! I'm going to borrow that line from now on... :)

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  5. I'm learning, too, that I don't always have to explain my child's special needs. That sometimes, people overreact. And it's really none of their business. I've also learned the phrase "I'm sorry you feel that way" which sounds polite but isn't apologizing for anything other than wishing the person felt differently. ;)

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    1. Another handy response! Good one, Shell.

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  6. I'm with you here. My kids' special needs aren't an excuse for why they are allowed to make certain noises or do certain things. They are allowed to do those things because they are people with the same rights to make noise as everyone else. Just because those noises aren't words, that doesn't make them wrong. I think I would have had a hard time not telling the woman that the sounds of her unsolicited words coming out of her mouth were annoying.

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    1. A-men! I typically would have said more to her, but I was wiped out and not up for it (this was at 8:50 p.m.). I just wanted to get off that flight and get home.

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    2. I see all noise in the same way: It is a sound and the source of the sound makes that sound for a reason.

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    3. I also would've had a hard time not saying something about her mouth noises being just as annoying. Good on you for holding back!

      It really isn't anybody's business, and while mentioning his special needs may sometimes be necessary, you SHOULDN'T have to constantly fell like an ambassador. I'm sorry you feel like you have to be.

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  7. Hmmm....to be snarky....to be SUBTLY snarky....to be educational....to be diplomatic....to be non-specifically defensive....there are so many options in those situations, variable by context. I have a harder time deciding when to give in to / initially restraining the trained-in reflex to PREEMPTIVELY explain my son's special needs (as that both has a good chance of reducing the more damaging judgements, and an even better chance of guaranteeing the more subversive judgements).

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  8. There are some days when we feel up to being that ambassador and others when we know it's best to just let it roll. There are no rules about it... But I am pretty sure I would have imagined kicking that woman's seat after she rolled her eyes.

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    1. Jen....
      There are some days when we feel up to being that ambassador and others when we know it's best to just let it roll. There are no rules about it... But I am pretty sure I would have imagined kicking that woman's seat after she rolled her eyes. Crack. Me. Up!! ;-D

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  9. Wow. Way to raise above the situation! I have a difficult time with explaining my 17yo daughter's behaviors. She's VERY restrained, but once in a while she does something "odd" and I totally feel the need to explain. Thanks for the motivation to restrain myself. Sometimes little is enough. And manners are always in order.

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  10. Well that's weird! I commented, then it showed up as an old account, then deleted.

    Anywho, I was just saying that my husband is like you and I am the one who constantly apologizes and starts the conversation with "He's autistic". I need to stop that. Great post!

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  11. One woman said something, the rest within earshot didn't. No need to explain yourselves to the one for whom social skills are lacking, unless you are feeling particularly gracious and want to educate the one who missed the memo.

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  12. Ellen....
    I think that there are lots of people in this world who do not "get" special needs mainly because they are inexperienced. Sadly. No explanation should be needed if only they had firsthand experience, encounters, friendships, etcetera, with these Beautifully Unique special needs children!! Me, I could most likely tell right away that Max has cerebral palsy. Why? Because I have been blessed to know several individuals with CP!! Including one girl who I think of fondly to this day.... Despite our paths ending. It is not hard to get to know these precious children!! ;)
    --Raelyn
    PS. I would have simply smiled at Max.... ;)

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  13. I really dont have anything to say well besides when my sister and I were 5 and flew to Disney World(the first and last time I've been on a plane) she insisted on carrying her big baby doll on the plane and therefore it had to get scanned. She was mad,she did not realize she would get it right back. Me, on the otherhand was more upset with having to take my purple light up sneakers off.

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    1. Kathryn....
      My sister has a beloved stuffed bear {Named Teddy!!} that she used to take everywhere with her. My sister never liked it when he got scanned, either!! So we told her that they needed to check Teddy for a bomb.... Like the on "Peter Pan"!! Of course, those were pre-9-11 days.... ;)
      --Raelyn

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    2. Whoops. We told her that they needed to check Teddy for a bomb.... Like on "Peter Pan"!! {No "the"!!} ;-}

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  14. You handled this with amazing grace and patience under pressure. I have a son who is non-verbal but makes loud noises and yells sometimes in public. Luckily, I haven't had anyone say anything, but I have had a few stares.
    Reading your post gave me an idea. Have you ever thought about having a small business card or note-sized paper printed up explaining that your son has special needs (w/out going into detail), and that you're grateful for their compassion? I like that 1. you don't have to explain anything verbally in front of your son 2. that you can hand it out to people who have actually been kind, as a thank you 3. You can hand it out to the compassion-less jerks and hopefully make them feel bad about their behavior.

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    1. Kitty....
      "Reading your post gave me an idea. Have you ever thought about having a small business card or note-sized paper printed up explaining that your son has special needs (w/out going into detail), and that you're grateful for their compassion? I like that 1. you don't have to explain anything verbally in front of your son 2. that you can hand it out to people who have actually been kind, as a thank you 3. You can hand it out to the compassion-less jerks and hopefully make them feel bad about their behavior.". I. Love. That. Idea!! You are brilliant!! ;)
      --Raelyn

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  15. I think that special needs kids and their parents sometimes get the misplaced, spillover hostility from people who have this bee under their bonnets about parents who are lax about controlling their unruly kids. The woman's first assumption may have been that Max is just misbehaved, and that you are a lackadaisical parent. To me, that's a double whammy. First, the behavior may arise from a disability, and second, I think the idea that "parents today" are too lax is just way overblown. When I was 10 and flying to Florida to visit grandparents, kids cried on airplanes no more and no less than now.

    So explain, or don't explain. In situations like this, I honestly don't think it makes any difference. Some people have a fixed idea of what they're seeing and nothing you say will make them change their minds.

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  16. Maybe Max needs learn how to behave in polite society. What are you going to say to people when Max is 25 and not ten? You need to remember that other people have rights as well.

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    1. Jennifer - she should tell you - "I'm sorry you're disturbed". from a mother with a 17 year old special k. ;)

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    2. Jennifer did you actually read what she wrote regarding him behaving during the long flight and only making a few noises as they circled the tarmac?? Clearly he was well behaved in "polite society" despite one person being irritated out of who knows how many aboard that plane. I am sure there isn't a parent here with a special needs child that doesn't get that other people have rights, but that doesn't discount the fact that our child also has the same rights. We shouldn't have to apologize or be chastised because they are being themselves. Most parents of special needs children put in a great amount of effort and planning when it comes to taking their child out into the world. We do this not just so our child can have an enjoyable time, but so that people in "polite society" aren't offended. There are far more parents of "normal" children that could care less if they have a child screaming or throwing a tantrum and how it might bother someone.

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  17. Jennifer - she should tell you - "I'm sorry you're disturbed". from a mother with a 17 year old special k. ;)

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  18. I love this. Addie's dwarfism is obvious, butit doesn't stop people wanting an explaination of my child's size, or think I'm a bad parent for letting her climb by heeself. Sometimes it saves me to just smile and nod. Thank you for that reminder :)

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  19. this post could not have come at a better time. I just went through something similar with my Benny last night at the YMCA kids karate class. one of the teachers is, well, not a nice person. Ben brought one of his imaginary friends to class last night and wanted him to have a turn when they did forward rolls. When this kids mind is set on something, watch out. Even thought she told him to sit down, he helped his "friend" do the roll and told him what a great job he did! I never want to make excuses for bad behavior, but I do believe there are times that making exceptions for Ben's quirks is necessary...and harmless really. The teacher didn't like it one bit, made him sit out the rest of the class and I found myself trying to make light of the situation and explaining a bit when she started making comments under her breath. The whole scenario lasted just a few minutes but all night last night I kicked myself for even feeling like she deserved an explanation. She's teaching 4 year olds....what did she expect?!

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  20. Hi Ellen, I was on eBay looking for myself a cars hat and I ran across one that made me think immediately of Max. It has like attached pretend headphones and mic, lol the pit crew would wear. I thought right away, what if you could rig up a hat like that and use it to "disguise" Max's headphones in a way that would connect him with his hero? Anyway it's just a cute thought I had. Here is the auction so you can see what I mean: http://www.ebay.com/itm/281236051646

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    1. Just seeing this now, thank you! That is a great idea!

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Thanks for sharing!